Still feeling lost

[Sporty-mi]

Thank you for your replies to my last message.

I was waiting for my new blood tests until I posted again.

I've been on 100mg of Levo and 20mg of T3 and increased to 40mg of T3 2 months before these latest test results.

In MARCH i was on 100mg of Levo and 20mg of T3

These were my results THEN :-

TSH - < 0.10. Range 0.30-5.50

Free T3 4.9. Range 0.00-7.00

Free T4. 12.5. Range 11.50

B12. 1595. Range 223-1132

Ferritin 33. Range 14-186

Vit D 170. Range 50.00-125

NOW JUNE since ive been on 100mg of Levo and 40mg of T3

Results are now :-

TSH. <0.10. Range as above

Free T3 6.7

Free T4. 11.6

B12. 1280

Ferritin 80

Vit D 137

I don't understand as now I am feeling worse. I swear it's the Levo.

I'm dairy and gluten free.

I go to see my endocrinologist tomorrow and I'm thinking of asking to stop taking the T4 ( I don't understand why my T4 has gone down) I just think my body doesn't agree with it.

I'm thinking of asking if I can stop the Levo and just use T 3 or swap to NDT

I'm at my wits end, I've been like this since last November and saw a slight improvement when I introduced T3 but now feel worse.

Has anybody else experienced this and what are you taking now.

I would be interested in any advice possible.

Thank you lovely people.

[jezebel69]

Hi - I was in exactly the same position and was only allowed to increase my T4. But every increase made me feel worse. Eventually I had a private blood test which showed high RT3. At this point I stopped the T4 altogether and started to feel better. I'm unlikely to get an increase in T3 by prescription so will have to take responsibility of this myself. Its also unlikely that I will return to T4 as I feel so much better.

[Sporty-mi in reply to jezebel69]

Thanks for your reply . So glad your feeling better. I'm scared they will want to increase my Levo but sure that doesn't agree with me. So your on T3 only ?

Sorry what is high RT3 ?

[jezebel69 in reply to Sporty-mi]

RT3 is reverse T3 and its another of the hormones that can be produced via your thyroid. There are people far more knowledgeable than me on this forum who can give a full explanation but I knew I needed to get the amount down. Stopping T4 is the most effective way - even if temporarily.

[Sporty-mi]

Oh right. I don't think my endo has tested for RT3 just free T3. I will ask him

Thanks for your kind reply

[greygoose]

I doubt if you have excessive rT3, your FT4 isn't high enough. Besides, the NHS don't test for rT3. And, it's low because you're taking so much T3.

On the other hand, your FT3 could be a tad high for you. You could try decreasing it a teeny weeny jot.

[Sporty-mi in reply to greygoose]

Ah thank you greygoose .. it's a minefield isn't it. I wouldn't understand. But I'm sure the levo is making me ill. Even when I was on 20mg of T3 I still didn't feel well.

[greygoose in reply to Sporty-mi]

Well, then, stop the levo, see how it goes. It won't be instant, because it takes time to get our of your system. You don't need your endos permission, just tell him what you're doing when you see him. Lots of us just take T3.

[Sporty-mi]

So I can just stop T 4 .. well I will tell him and see what he says. Thank you for your time and advice

Greatly appreciated. Sometimes I think I'm going mad !

[Sporty-mi]

Any last thoughts advice before I see endo .. my appointment is later this morning .. wish me luck.